A support thread for those dealing with the ups and downs of living with chronic illnesses, pain or disability.

I don’t know if this will help anyone else but thought I’d put it here in case. I have to avoid bending over but bending at the knees causes protests from them. This has made finding bits that have got to the back of my undercounter fridge rather a problem. I’ve repurposed some shallow food storage boxes as trays so now I can just pull out a tray to see what’s at the back. I’ve also found a walking stool which brings me down to the right height and folds up and sits in the corner when not in use.

I have been very busy today. I have done runs to the recycling centre, got a car clean. Planted flowers snd weeded the front and back garden.
I would still be going if it was 3 years ago, but had to stop as I was getting heart palpitations. Its my body's way of telling me I had done enough. I can't keep going like I used too.
I am sleepy now, but look forward to a shower and the salad I have prepared. Don't feel like cooking.

I’m currently collapsed in my recliner chair with my cold packs strapped to my throbbing feet. It seems to have taken me most of the morning to get some mince into the slow cooker and salads made for my lunch today and tomorrow. I still cook more or less from scratch as I have to avoid onion, garlic and tomatoes, but I’m finding that it’s taking me longer and I’m finding it more tiring. I’m interested to know how other people cope with cooking.

That's a good idea teabagwoman I'll do some research!

RosiesMawagain, your daughter sounds very determined. Takes after her mum?

Grandmabatty, I have two foot shaped gel packs that can be frozen. They strap to my feet and are wonderful when my feet are throbbing. They were given to me some time ago so unfortunately I don’t know where they came from.

Twiceasnice I'm sorry that you are in pain. I often have a lie down when my feet get too sore. At the moment, I'm suffering from really swollen feet and ankles which are very painful. A wee lie down is on the cards

Cossy I've had Hydradenitis Suppurativa for about 20 - 25 years now (I'm 67). After every antibiotic the doctors tried, every other thing every suggested (roll-on deodorant/spray deodorant/none at all), and various things prescribed to wash myself with - Dettol, Hibiscrub, etc., the ONLY thing that works for me is TRIMOVATE cream. I'm losing weight (3 stone since Oct so far, but a few more stone to go). I've noticed that it flares up if I've had a lot of sugary foods in a day (I'm not diabetic). I've never known anyone with this condition.

Received not recorded

Having a very painful day today, currently lying on the bed after taking painkillers. I have worked this morning and it has been really hard to walk.

However I have recorded a phone call from the hospital with a date for my spinal op which will be in 4 weeks time. I’m really anxious about it (never had a GA and have a bit of a phobia of it) but if it works it should radically improve my situation

RosesMawagainI sympathise with your DD.I have PA and it’s horrible the flares are hard to cope with.I also have PMR and DDD,but still live to tell the tale.😀

Both knees replaced. Ongoing physio, exercise, walking.

JANH

Very interesting thread that I will watch, I have numerous hidden disabilities however what gives me the most trouble is osteoarthritis together with psoritic arthritis, I have a lot of pain.

My youngest D was diagnosed with Psoriatic Arthritis before she was 30.
It broke my heart to see her limping even at her wedding later that year. 4 years of an immunotherapy drug trial were magic, but she was told No babies so she came off the drug and found she had (possibly connected with the drug therapy) Endemetriosis.
IVF was planned but fortunately nature intervened.
She now has 2 little pocket rocket boys (7 and 4) and I am full of admiration for how she copes with keeping up with them, a job, and the psychological implications when the Psoriasis flares up although fortunately the only unavoidably visible signs are (usually) her forehead and arms.
Very debilitating for a young woman of now 44 now the PA has come back - how she runs after them, gets up and down from.the floor, carried them when they were toddlers , mind boggling

Luckygirl3

Does anyone else ever feel you have outlived your body!!??

Not yet as I can still do things even though it leaves me achey and fatigued. I know its coming though.

Luckygirl3

Does anyone else ever feel you have outlived your body!!??

Metamorphosis sounds appealing!

Well, mine is annoying and frustrating me!

Tried to do some gardening this morning but had to admit defeat before the task was finished.

Does anyone else ever feel you have outlived your body!!??

Many thanks for this thread and to all who have posted. I have an incurable cancer and several of the problems others have mentioned but learning about how so many of you are handling so much, and often so much worse, than me has had a strong impact on me today. I have a lot to think about now but at the moment it's making me feel -sod it, I'm just going to get on with it! If you knew me, you'd see that this is a real positive. Thanks again.

I have a list of things that are wrong and I am fatigued. I decided today I could not leave my front garden, I have cleared weeds and dug the earth over and dead headed roses. I got down on the grass but arthritic knees make it hard to kneel. I have got it done thankfully. Now laying on the sofa.
I feel lucky to be able to do things, and I still drive.
I have a little rant though. I cannot stand it when people say Oh I'm less say, 70, I am so healthy I do this and that, and then they compare themselves to others and say things like Oh she/he never does anything, no wonder she looks so old, plus other things. These people are fortunate and should take time to think others might not be.
I do not look ill, and I am lucky to be able to get on with my life but like others I have hidden disabilities and believe me I do get tired.

When I started this thread I didn’t know just how much some Gnetters are having to cope with; what with pain, lack of mobility, fatigue, the constant balancing of one condition against another and then having to put up with being told how well you look! I don’t think any of the medics realise just how difficult it is. If ever there was a need for holistic medicine it’s here.

Talking of pain, I’ve just started an audio book on mindfulness as a way of reducing pain. Has anyone tried this? Found it helpful?

It somehow helps to know that we aren't alone in being in pain. I'm thinking about you all now.
I've got " crumbling vertebrae, collapsing discs and a degree of scoliosis"....the exact words of the doctor. If I could be a lady of leisure and spend my life lying down I would hardly have any pain at all.
But every single thing I do, even just getting up in the mornings and putting the kettle on, causes me increasingly horrible pain. It's reached the level now of affecting my walking and I'm absolutely fed up with it. The pain is utterly sickening. I take co-codamil which sometimes helps but sometimes doesn't. And the amount of relief is getting shorter, half an hour if I'm lucky.
I have a reclining chair which helps. Also a large sofa so I can lay flat when the pain is really bad. Nothing seems to help except for the laying flat. Like I said, if I was a lady of leisure.....
I've tried asking for other painkillers, or more painkillers ( I'm rationed to three and a half per day) but have been turned down.
Surgery would not help apparently, and I'm too old anyway.
So, every day is a struggle. But I realise from reading this thread that there are people much worse off than me .
Sending fervent sympathy to all of you.

I've had primary breast cancer 3 times....so 3 lots of treatment over 12 years ...I continue to take estrogen blocker medication .....I am left with
Chemo induced Peripheral neuropathy
High cholesterol from meds
Joint and muscle pain
Gastritis
Recurrent utis
Fatigue
Osteopenia
Tbf probably sounds worse than it is ....I have a blue badge and get pip ....still manage a couple of days work a week amd enjoy holidays and spending time with my GC and my 90 year old mum
I'm 61.... enjoy my life .....always looking forward .....I won't make old bones...chemo has unravelled my dna too much....and always the fear of secondary cancer hanging there ...but i guess you have to live the life you have ...as well as you can....I'm 6 years post my 3rd diagnosis so grateful for the health I have...and some days I'm really good

I'm 71; have had multiple sclerosis since 1992 (though probably had it at least a decade before that), and since some of my symptoms are so atypical I still have ME written on my GP's notes as well.
I also have macular degeneration - thankfully only in one eye - for which I've been having monthly injections since 2019. Oh, and there's the dodgy kidney which occasionally causes problems (stones, UTIs), plus I have IBS
And most recently I've been diagnosed with unstable blood pressure, high cholesterol (which I've managed to reduce with a combination of diet & medication), and 'something' going on with my heart ..... yes, I know, I'm greedy!

Anyway, I have lots of hints & tips that my husband & I have come up with over the years, but no time to post them today as we have our granddaughter staying this weekend.

All ...

Lucky girl are you sure you're using the right name? ... no!

I want to commend all the wonderful people on here who are soldiering on and coping with multiple pathologies that would be unimaginable to a younger person. Pats on the back Ll round!

Angina, athritis in knees, feet, back, neck, fingers.
fall quite easily...without trying..leg ulcers, one is taking a lot of time to heal,have to wear compression stockings, the reason why it takes me an hour to get washed and dressed in the morning. I do all my shoping online, and everyone of the Tesco delivery drivers are brilliant, I appreciate them, now I only do what I feel like doing.